Where is Home at the End of Life

“Perhaps home is not a place but simply an irrevocable condition.”
― James Baldwin, Giovanni’s Room

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The rural house sat at the end of a fork of the south bay of Puget Sound. It was an unremarkable house, but exiting the backdoor, like the closet door into Narnia, my first childhood home was anything but ordinary.

Through the wooden screen door and down the steps, past the lattice-fence that divided the tamed yard from the less-tamed yard—the posts catching falling snow in a pot to be mixed with sugar and vanilla in winter and disappearing under my mother’s trailing roses in summer—beyond the huge homemade swing set and the outdoor brick fireplace my father built, between the log cabin playhouse and the muddy flats of the bay at low tide, lay the woods. I spent long summer days in that strip of trees where make-believe flourished. In the front yard, my sister and I waited for the bookmobile, the borrowed books flaming more imagination. Kids and fathers played softball in the field next door and little girls played restaurant in the neighbor’s abandoned chicken coop.

We left that home when I was eight, the thirty miles of interstate between it and my second home bisecting my life into its first before and after. I lived in the new house on the side of the hill the remainder of my childhood. But the home by the bay remains irrevocably my soul home, the one I will remember when memory eludes me.

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My mother lived in fourteen houses with her family of origin, her father following work and running from creditors. She moved, alone, across the country for a civil service job as World War II began and relocated several more times, waiting for her new husband to return. Her dream, she tells me decades later, was to stay in one place.

She got her wish. After the war, she and my father bought the house I was born to and lived there until we moved to our hillside house, where she stayed for fifty-five years.

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My own nomad years began in adulthood. I had five brief stays between college and moving across the country as a newlywed. I moved nine more times before returning to my family home to care for my mother, where I’ve lived again for a decade—as long as I lived here the first time, longer than I lived in any house in the forty-two years between.

I was sixty-four, when, after four years of accompanying my mother, I reached the end of my line. I couldn’t care for her in her home any more, a role I had reluctantly taken on in the first place. Would she have to leave the place that, like my first home on the bay, was the one locked in her soul? If we moved her to assisted living, did that make me a disloyal and selfish daughter? Would I be breaking a promise I hadn’t made? I had already stayed three years longer than I committed to. Was there another way? My one hundred year old mother struggled with me living with her, I think; and she battled against the few hours a week paid caregivers were in the house. Was it harder to have someone in her own home—where she had been queen of the castle for more than five decades—than it would be if she moved one more time? Nearly five years after her death, I’m still questioning myself.

When Jacinda Ardern, Prime Minister of New Zealand, resigned unexpectedly in January 2023, she said, “I am human, politicians are human. We give all that we can for as long as we can. And then it’s time. And for me, it’s time.”

Ardern’s resignation made me think about caregivers, the limits of our service. What happens when we realize we no longer have the energy to continue? Can we resign? Are we obligated to continue in the way we had been? For how long do we pressure ourselves not only to physically but emotionally sacrifice our lives in favor of a parent’s or other loved one’s perceived happiness? I knew what I needed. I needed my life back. Did I have the right to reclaim it? I decided I did.

Moving our mother to assisted living seemed like the best of problematic choices. But my sister and I didn’t abandon our mother. Caregiving is a group project and children can continue to be project managers without being responsible for all the tasks that are necessary to provide good care at home. The job became more equal between us. My mother adjusted. I got my life back.

After more than six years of accompanying her towards life’s end, my mother and I finally were approaching the closer relationship that I had hoped for when I moved in with her. But it’s only been recently that I realize all the forward movement, every bit of it, happened after she moved, when I became just her daughter again. If I have regrets, it’s not that we moved her from her forever home, it’s that we didn’t do it sooner. I wish there had been more time.

I have been sad we didn’t bring her back “home” to die as we promised ourselves we would to get us across the decision bridge, but is it practical and how does one time that? In retrospect, I think it would have been disorienting and stressful. The hospice nurse said she was home, the place that had become familiar; and she was in her own bed, the one she had shared with her husband.

Everyone says they want to die at home. What does that mean? I am contemplating the question for myself, to make known my hopes to my own children. And I am considering it now, at seventy, while I am, hopefully, far from the need. I’m considering it in the light of having been the giver of care. I hope not to be in a hospital, with bright lights, beeping machines, an unfamiliar bed; but if that is what happens, I can live with it . . . or die with it. I don’t want my children to sacrifice their living to keep me in any particular place. I want to free them to be my beloved children.

They are my home. Home is inside me in all the places I’ve been and the people I’ve known; playing in the woods, rolling down slopes of grass between beds of pansies and violets, waiting for the bookmobile.

I think my mother was home too. I have made my peace.

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“For many patients, ‘home’ isn’t the physical place. It’s a metaphor for a place that’s not medicalized, that’s comfortable and full of love.”
— Dr. Haider Warraich, author, New England Journal of Medicine study